Allyson -- could you explain why you believe EDS and ME are related. I just don't see the connection other than overlapping symptoms. There are overlapping symptoms with many conditions and this doesn't mean in any way they are related. If you look at the Canadian Criteria, you will see that ME is not a connective tissue disorder. Also EDS is genetic, ME is not.
.
Yes Kina, as i have staed a few times now in this thread the reason i began to think they are related is because a professor of medicine at Melbourne University - (arguably Australia 's top university ) who is also head of a Spinal Unit in a major teaching hospital in Melbourne told me he thinks they are one and the same for a lot of people and the EDS diagnosis has been missed.
I have since found several research papers - most listed or summarised earlier in this thread - that also support this line of enquiry.
And a senior British Rheumatologist - Rodney Grahame - has also unequivocally stated he thinks lots of people who think they have M E actually have EDS. I htnk he says at least 65 per cent form memory.- i do NOT mean hypermobility when i talk about EDS.
that quote and his lecture notes to an international conference are also in the thread above.
As medical professional myself I see the merit in this line of thinking and understand how research ideas arise and are tested and promulgated before they are established or proven.
As with ME, EDS symptom research has been overlooked or not taken seriouly for many many years outside of hypermobility
Also it has not ben proven that ME is not genetic - who has been tested for it?
the 2011 International consensus criteria do mention the possibility if not more of a geneticc link.
And DR Don Lewis ( one odf the co- authors of the 2011 International consensus criteria) speaking at last year ME cfs conference in Mebourne said t appears there IS gentic link in ME.
"You were born with it" were the word he used from memory.
again, the research has not been done to fully test this as far as I am aware, and genetic testing is not yet refined enough to establish it one way or another.
the reason i am keen to discuss it is - ot may well be right ; the professor who told me is quiue interested in it but he has many other reserch concerns - it may take 10 - 20 years for the idea to establish itself and get reasearched in the medical community....I can do math...i may not live that long and i would like to assit the line of enquiry and see if it resonates with others and if so if we may hasten research into it and find a cure.
No- one is obliged to read or follow or reply if they are not interested.
Peronally i would look into moon landings s the cause if it were offered as to date, no known cause has been proven for ME an until it does i think we should examine all avenues.
But seriously - in five years of researching the topic this is the only topic that has any plausible explanation for the compexity of ME and its vast range of seemingly un-related symptoms - CTD permeates and indeed makes up muc of the entire body - and for the intermittent nature of its symptoms.
FInally the fact that this thread has had well over 18000 hits - indicates that there may be a fair degree of interest in this topic from PWME, and one needs to ask why that would be so.
best regards and thanks for your continued interest.
Ally
